I have asked many of you to pray as we have consulted 4 different orthopedic doctors so I want to share with you how God was on the move and answering prayers. I also want to write it down to remember His faithfulness the next time we are facing a fork in the road.
A little disclaimer..... every kid with Fibular Hememilia is unique..... there is a broad spectrum of what all this diagnosis can entail and therefore a broad spectrum of treatment plans. I'm not going to go into the nitty gritty of her leg on here. Our plan was never to "save her leg" but to set her up the best we can for life with a functional limb.... we had plenty of time to process the idea of amputation and we were happy with this option for her based on her anatomy. Over the past few months I realized many people had no idea that this was our plan based on the looks on their faces when I would convey this to them.... but the same look of shock accompanied by a small gasp was my reaction if anyone mentioned limb reconstruction... only God could fill me with peace about going this route.
So, let's back up a bit and let me tell you the crazy ways God moved to direct our footsteps:
When we got Colley's file and needed to talk to the orthopedist, the limb lengthening specialist (Dr. Gilbert) was out of town, so we consulted with his partner (Dr. Doyle) who is a family friend. This was where we heard what we needed to hear to say yes to our little peanut! His words as I remember them were "slam dunk with an amputation. She will have an awesome life. Go for it!"
We met with Dr. Doyle once we were home and he still said amputate but to get 2-3 other opinions so that we would be able to defend to Colley one day why we made the choice we made. Easy, I thought. Let's go to a few others, they will say amputation is the best option for her and we could move along. Two weeks later, Dr. Doyle pursued us.... calling twice and texting to say we needed to talk. He had a change of heart, was now 50/50 as to what we should do. He gave us an hour of his time (free of charge) one friday afternoon. You could tell he had really been thinking about Colley and wrestling with what to do as if she were his own child..... such a blessing to have a doctor who cares and a doctor whose heart God was directing.
During our time with Dr. Doyle, Mei Sims' orthopedist happened to pop his head in and see us and then sit down and join in the discussion. So we had the undivided attention of 2 doctors! We left with a plan to go to Dr. Gilbert and to Dallas.
I talked to an old friend whose dad is an orthopedic doctor in Memphis. She was telling me about a spatial frame used in lengthening the tibia and I said I had heard of it.... to which she casually says "That's dad's invention." I was slightly floored to say the least. There is something comforting to know that you might use a device and you have access to the inventor of it!
Dr. Gilbert was great and felt like she was a strong candidate for lengthening, but agreed that this was our decision to make.... meaning he couldn't for sure say this was the path to go. In the meantime, he got her a big shoe to help her out.
And then some "strange" things began to happen!
I met the father of one of Rollins' new friends at school.....upon meeting colley he asked what was up with her leg.... he explained that for 20 years he sold all the devices used to correct issues like that.... he then went on to say that his parents were told to amputate his legs when he was born and they chose not to.... his legs are corrected, he is great.... and he ended with "I don't even have a hat in the ring here, but I don't think you need to amputate."
I'm telling a friend at church about all of this and come to find out she has a totally reconstructed ankle... which the ankle is one of Colley's larger issues... hmmmmm..... at this point I'm thinking "Ok God, what are you doing?"
Driving down the road one day, I was deep in thought about our decision and thinking we just need to amputate when I look in my rearview mirror to see Colley kissing and stroking her right foot.... this happened 5 separate times over the next couple of weeks! I remember just thinking "oh no! There's no way we can remove her foot!"
Dallas was great and all they agreed on was that this is a 50/50 as to what to do.... we were left in a gray area where the decision was very much in our hands to make.
I found out about a neighbor who I had never met..... her son is 6 months older than Colley with the same diagnosis of Fibular Hememelia! It is almost unheard of to have a child in your city with this same issue and she is walking distance from my house. God was providing.... a child who would look like her on some level.... even if he is a boy and is white! Ha! She also has a Chinese buddy with a different need but a similar "big shoe"..... both of these friends are going the reconstruction route which will be so encouraging to have moms who understand. And all 3 kiddos will be at the same school!
After all of this that was happening, I felt like God was so clearly guiding and directing who he put in our path that I would be shocked if we didn't lengthen but at the same time I felt like a kid saying "I don't want to do it!!!!!" It just seems like a hard and long long road for colley and for our family. We were still indecisive so Dr. Doyle thought it was worth our time to go to Baltimore to one last doctor.
Before Baltimore, we went back to Dr. Doyle to get fitted for an AFO to stabilize her ankle when she walks. I met his PT for the first time and she was such a blessing..... found out she is a close with my friend who dad is the inventor doctor and was also a long time PT of another friend's sister.... she has walked with her through limb lengthening for years..... AND get this.... she has a heart for china and has gone on mission trips to orphanages there. When I asked her what city?? To the same city I lived in after college!
Fast forward to the waiting room in Baltimore.... On Facebook, I have reached out to 2 moms whose daughters were also from china and had FH that seemed similar to Colley's.... guess who happened to be in the waiting room at the same time? One of those sweet babies and her mama! So nice and surprising to connect in real life!
In Baltimore, we met with one of the top dogs...... Dr. Standard....Our prayer was for clarity.... at the end of our meeting, Derek was like "I don't know why we'd go anywhere else. There really isn't even a choice here. We have to reconstruct" Well, there is your clarity! My text to my friend was "Well crap. We're coming back to baltimore. He is awesome." Excuse my language but Baltimore is far and I'm one of those people who thinks there's no place like home.
He met with us for an hour, was not in the least bit frazzled by the nerds and tic tacs dropping all over the floor as we talked..... was able to laugh when Henry threw his stinky feet up in his lap to be examined.... and even laughed when Henry found a "hairy thing" as he called it in his socks and put it in the doctor's hand. In other words, He can handle us and we have confidence in his abilities. Its a great match.
At one point he said something about a shallow hip and I plugged my fingers in my ears and said "I can't hear you, I can't hear you".... any mention of anything spica causes this reaction ;) Once I explained why, he laughed and said, let's cross that off the list of to dos for now..... one step at a time.
I told him we have 5 kids so baltimore is going to be hard.... would he be open to a team approach with Dr. Gilbert in the years ahead. His reply "I learned long ago that doctors need to check their ego at the door and you need to do what is best for everyone. Skip is a good friend of mine, we talk all the time and I'm happy for us to all work together." WOW! Come to find out that they go on mission trips together so it is a true friendship, not just work related..... that was an unexpected blessing. What does this mean? There may be times where Dr. Standard puts some hardware in and Dr. Gilbert can take it out...... or times where Dr. Gilbert and Standard talk before a surgery and Dr. Gilbert performs it so that we can stay here..... I haven't actually informed Dr. Gilbert that he has been drafted to our team so I hope he's ready for us!
And there you have it, 12 steps to a decisions. 12 instances where we clearly saw God move to get us to where we are now. Praise God for a plan! Next winter we will schedule her first procedure ..... something coined "super ankle" surgery.
Either decision could have been a right decision..... but I'm thankful for a God who cares.... He cares about Colley..... and was faithful to guide us along the path He has chosen for her.
Personally, He was so faithful to guide us despite myself.... Colley has been home 4.5 months and during that time, I can count on one hand the number of quiet times I have had.... sure I'm dependent on prayer these days but I feel guilt over my lack of ability to find time alone, to focus when I actually do find time and to pursue God with my whole heart. I KNOW that His love and affection for me are not dependent on my level of love and affection for Him.... He is constant while I am all over the place.... I've always known this is my heart but now I see it played out in my life. So this journey to "make a decision" is a beautiful reminder to me of that simple fact.... He loves me and I am firmly in His grip.
|Tuckered out after a long morning|